Infrequent, but hopefully not inaccurate, postings about anything that captures my attention or pushes my buttons. Consideration currently being given to adding kittens as the background picture to try to increase number of readers above 0.

Wednesday, 12 September 2012

What price would you put on your bladder?

My mum is awesome. She is. For a million reasons. This is just one. Here's another. Decades of being a palliative care nurse and undertaking various forms of volunteer work is reason three, four, five, six, seven...

She was born in the war (as she will tell you many, many times, particularly if you ever mention wasting food or throwing anything away), and she hates bananas, and sugar in her tea. She also has bladder cancer.

Now this isn't a why do bad things happen to good people rant. It may still be a rant, but it's a specific rant about the treatment that my mum should be getting and now isn't.

In 2009, 10,540 people in the UK were diagnosed with bladder cancer. When the 2012 figures are released, my mum will make up one of the overall number.

Bladder cancer is the seventh most common cancer in the UK. Cancer Research UK has lots of information about it here, here and here.

My mum was diagnosed earlier this year with pretty advanced, pretty aggressive bladder cancer. She had the cancerous tissue removed, and undertook a six week induction course of intravesical therapy, which involves putting liquid drugs directly into the bladder through a catheter. Because she has a grade 3 tumour, she was given intravesical BCG (yep, the same BCG that resulted in a scar on your upper arm that would get punched at school, but in much higher doses).

Interestingly, no-one's that sure why BCG treatment is so effective for treating bladder cancer, but it is, and it was in the case of my mum. She completed the course, had a follow up investigation, and there was no sign of the cancer having reappeared.

She should now have moved on to what is called maintenance BCG therapy - having it every few weeks or months for the next three years. But she hasn't, because there is a worldwide shortage of it.

Professor Sir Mike Richards, National Cancer Director, notified the NHS about the shortage in a letter dated 6 July 2012. In it, he writes:

"I am writing to draw your attention to the current global shortage of products used to treat patients with bladder cancer""Two companies normally manufacture Intravesical BCG. Production of one of the two products (Immunocyst - manufactured by Sanofi Pasteur and distributed in the UK by Alliance Pharmaceuticals) has been stopped and is unlikely to resume before late 2013. The manufacturer of the second product (oncoTICE - MSD) is working hard to increase production, but this will take time""In any one year, 2000 patients will receive induction therapy with BCG and a further approximately 4000 will receive it as maintenance therapy""Initial estimates are that around 200 (patients) would normally start BCG each month and that 10-20% of these might now undergo surgery. This equates to around 20-40 additional patients undergoing cystectomy for every month that the shortage lasts"

Cystectomy is the partial or complete removal of the bladder. It's also what my mum most fears since being diagnosed.

The British Association of Urological Surgeons also provided information regarding the shortage on its website in July 2012, stating that the 'production difficulties' have not been clarified, but production is unlikely to recommence before the end of 2013.

Sooooo, now that I've set the scene, here's a list of my naive questions, given that hundreds of British citizens will most likely need to have their bladders removed prematurely/unnecessarily as a direct result of the BCG shortage:

1. How often do shortages like this occur?

2. How are existing stocks being rationed?

3. Why is the Secretary of State for Health (previously Andrew Lansley, now Jeremy Hunt) not addressing the patients affected directly and committing to do everything in his power to help resolve it as soon as possible?

5. Heaven forbid that I encroach upon capitalism, market advantage and patents, but given that we are talking about people's lives, not about delays to the iPhone 555 caused by production problems, is there really no way in which in the year 2012 other companies could have helped manage and maintain production? And if either side needed a helping hand / push / carrot / stick, could Governments not have provided that?

There is clearly a market for the product. There is clearly a serious and urgent need for the product. And yet seemingly nothing is going to happen for more than 12 months.

11 comments:

Q1: perhaps more often than we know!I went for my chemo treatment for bowel cancer last week and one of the drugs I was due to receive wasn't available due to a national supply issue (i.e. shortage) - unf***ingbelievable!

I understand that those are the products designed by manufacturers to make them money and if they are endorsed by winning popular professionals, sales will be high.The only downside of it in a lot of people's eyes is the fact that there is no multiplayer content. The most unique thing about Ouya is that it is said to be "open" -- although what this means is up for interpretation.

For instance, when you visit a news site,your Facebook profile pic often shows up in the comment section on articles so you can comment with your Facebook account.If you already have your Facebook fan or business page created you will need to have 25 fans or "LIKES" in order to create a custom URL.

Literally wiping sweat from my forehead after doing my best 90s dance moves to a memorable mix of old school joints from the likes of Special Ed, Eric B.Her first movie was Holiday in the Sun in the year 2001, Help in the year 2004.You can in fact lend your ears to varied musical programs on rock music, jazz, country music and many more.

Use all tools to demonstrate your innovative thinking and to plan an impeccable happening.You might not allow people to write on your wall, however, when you share a thought, a link, or comment on someone's else wall, people can definitely also leave a comment. And it's not like Facebook to remain behind the hidden object games frenzy.

She is likely a WARRIOR PERSONALITY I talk about in the KWML Mastery Course on women, dating, love, and friendship.

Then came the ultra-popular Arkham games, that place you, like never before, into Batman's shoes as he skulks around and knocks hoodlums heads together (literaly). It is recommended that the golfers select those putters with which the golfers feel good and works well with their gaming pattern.

Upon examining some etymological dictionaries, one can conclude that games are a creative expression of the human spirit through the creation of an activity that has an entertaining, instructive and competing element.This way you are not disappointed when you get residence, and you won't have to make a excursion back to the shop. Next Jim Deacove developed a few of his own board games based on the principles of cooperation, group strategy and joint problem solving.

However, every character in the game (even supporting players) should be presented in this same detail. If you want to be able to hit the ball further and harder, you should keep in mind to keep your grip on the bat loose, your swing should begin with your legs and hips, and finally, you must always follow your bat through.

You might need heavier line and tackle to account for powerful river flows. The 360 Series from Aqua-Vu is specifically designed with a rugged encasement for ice fishing. When the water arrives at the inlet, most oxygen is dissolved because of the abrupt transformation of water movement.

Later, during the Middle Ages, many guests would bring small cakes to the wedding celebration.Typically overlooked as practically nothing far more than just dessert belittled as a symbol that provides nothing more than a location to stick the candles, the birthday cake has lengthy been relegated to 2nd tier status in the realm of get together arranging.